Anna's Story

“You don’t care enough about anything or anyone to make an effort!”

It was words along these lines that I said to my daughter one morning in August 2013. Over the last few months Anna seemed to have lacked the enthusiasm to do anything. She was never ready to leave the house on time. I sometimes had to wake her five times before she would stay out of bed long enough to get ready for school. She ate sparingly and pickingly.

Within 10 days of my outburst of frustration that morning, Anna suffered from an adrenal crisis. She was dehydrated because she could not keep water down, the salt levels in her body were dangerously low and she could not stand without fainting, she was diagnosed with Addison’s Disease.

Addison’s Disease is manageable with replacement therapy medication. It is life-threatening if the Addisonian slips into an adrenal crisis. This can come about through lack of medication or under-medication, physical trauma, infection or other illness. Thankfully we have not yet faced any adrenal crises since the one that led to diagnosis. Anna takes medication five times per day because of her high metabolism rate and always has to make sure she has tablets handy. When she goes on a school camp, we have to make sure a staff member is present who has been trained to give her emergency injection in case it is needed.

Fortunately, the most common drugs for treating Addison’s are easily obtainable and relatively inexpensive. The most difficult thing to deal with has probably been other people’s lack of understanding of the condition. This includes professionals we have had to consult because of related issues, as well as friends. There are some promising medical trials and research happening, which may improve daily life with Addison’s. Also keeping in touch with others in the rare disease community is so important as we are all a great support, and learning resource for one another.

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About Rare Voices Australia

Rare Voices Australia (RVA) is a national, not-for-profit organisation established in 2012 with a vision to be ‘the unified voice for ALL Australians living with a rare disease’.
RVA is Australia’s national alliance advocating for those who live with a rare disease.
RVA provides a strong common voice to promote health policy and a healthcare system that works for those with rare diseases.